My Whac-A-Mole Life   

No, It's Not Okay

My daughter has autism. She's beautiful, smart, loving and full of personality... and she has autism. She also happens to be one of those autistic kids with "behaviors."

Now, the parenting manual (what? you didn't get one?) states that parents can produce well-behaved, respectful children with a few basic tenets that usually come down to these:

  • Set limits.
  • Be consistent.
  • Be patient.
  • Reward positive behavior.
  • Clarify expectations and consequences.
  • Follow through.

Actually, I believe these easily apply to kids with autism, too...if you set them in all caps, bold them, raise the font size to 42 and keep your fingers crossed.

My daughter has and follows lots of rules. I don't even know some of them. Like every time we pass a certain restaurant on a Tuesday when it's raining, she gets a Frosty. Because that's what happened before - ONE Tuesday, ONE time, when it was raining.

You see, there's really no such thing as exceptions, special occurrences and temporary changes in routine. To her, every occurrence simply is a new precedent that she files away in that mysterious superbrain of hers.

As for rules that we intend to impose on her...well - and I probably can't even blame autism for this one - she thinks breaking those is hilarious. There's nothing more entertaining than someone in trouble. Especially if it's herself.

One more little reminder before I go on: she has no regard for social decorum. Yet, the world around her requires it - for inclusion; acceptance; safety; and even civility (we just can't all walk around without pants in most parts of this country).

Now, like many like-minded parents, we have invested ridiculous amounts of time, money, energy and tears in hopes that our sweet, mischievous little girl could learn to retrofit herself into our strange and dangerous world. This world has many social expectations that make little sense to her - like not hugging strangers; not stealing food from others' plates; not wandering hotel hallways alone; not shoplifting; and so on. While she likes to do all of these things, and as much as I respect her individuality and her independence, I simply won't allow them. Even when you tell me, "It's okay."

Look, I know you don't mind if she grabs the pickles from your sandwich. And I know you barely know her, but her hug really made your day. I realize that, by allowing her to do these things, you're intending to be kind, or helpful, or supportive.

But when she sneaks up behind you and yanks your ponytail holder out of your hair, I really do have to reprimand her. We both might think it's cute (and OMG she is cute), but it's simply not acceptable. It easily will snowball into a month of drive-by hair snatching, ponytail-holder hoarding, hell, I don't know...something that inevitably will take me by surprise. And while I know you probably don't mind, I do. And society certainly will.

Further, when I scold her, you probably will think my reaction surpasses the crime. Or that I'm just really, really mean. I assure you, I'm not half as tough, consistent or patient as the job requires. But I love her beyond words and I know her potential, so I try.

Maybe you're thinking that, as her special friend (great grandmother...favorite teacher...fairy godmother...whatever), you should be allowed to indulge her. Of course it's "okay" with you if she pulls the band aid off of your paper cut. You're thrilled at the chance to make her happy.

However and especially BECAUSE you love her, you should know it's not okay. She adores you, yes, but she will not necessarily differentiate this behavior between you and strangers. Safety aside, even if it's cute now, it will get less and less cute as she grows older.

So, the next time she swipes your baby's sippy cup or follows you into the bathroom for a peek, please don't giggle and correct me when I discipline her...or harshly remind her of our rules and expectations...or tear my hair out. Because no, it most definitely is not okay.

You Might Be An Autism Parent If...

What the heck am I talking about? Not sure much of an explanation is needed, but still, read THIS for the back story: Twitter? I Hardly Knew Her.

Some additional favorites from Twitter Pals:

Twitter? I hardly knew her...Until #YouMightBeAnAutismParentIf

Oh Twitter, how do we love thee? Let us count the ways.

I am a mild technology geek and early adapter. I often can troubleshoot a computer glitch one or two steps past "just reboot it". And I was "social networking" on Prodigy long before AOL sent you its first mail promo installation CD.

Despite all that, I really and truly didn't get Twitter. See, in 2011, Facebook updates were at an all-time low point (here's what I ate for breakfast; I'm standing in line at the post office; I'm getting a haircut), so the last thing I wanted to do was to expose myself to more inane updates, even more frequently.

Still, I had to know what all the fuss was about - especially when my own mother had 1,000 followers. As luck would have it, I started tooling around on Twitter at the same time the brilliant Jenny Herman (Many Hats Mommy) and Elise Ronan (Raising ASD Kids) conjured up the #youmightbeanautismparentif hashtag phenomena as a birthday gag. Here's the story.

Before you can say, "me too," I was hooked.

The hashtag, while not at its height where we were quipping ourselves ragged 24/7, remains sporadically active and forever connects us. It has, at times, mobilized, supported, infuriated and educated.

I know I'm late with this tribute - the tag is almost a year old now - but I still would bet that anytime an autism parent happens to stumble upon this hashtag for the first time on Twitter, they spend an hour or more searching the hashtag, reading an archive of awesomeness, and finding many new Friends. Not "friends" or "followers," but Friends. 


SO, because this hashtag feeds my soul and provides incomparable camaraderie (and because I'm under the delusion that I'm hilarious and poignant today), I am going to archive my #youmightbeanautismparentif brilliance on my blog. See, that's what cool about blogging; I can do that. I've also used my blogging dictatorship rights and just now decided to do it in a separate post RIGHT HERE...because this setup is getting kind of long and I don't want to steal my own thunder. 

Meanwhile, here are some links to other's related blog posts (and generally some great blogs you should check out anyway) showcasing and featuring #youmightbeanautismparentif. You can tell just how much I wanted this hash to live on and on and on if you've seen this post:  I Made A Feed. 

***Oh, and please chime in, because there's nothing more magically supportive and cathartic to those of us who play this game than either hearing or being able to respond: "me too!" in 140 characters or less. Enjoy!

Wordless Wednesday: Pressure Vests - For DOGS!

Most of us already know about pressure vests, right? These vests - often weighted - provide proprioceptive feedback that (theoretically) calms and grounds kids with autism, ADHD, sensory processing disorder, and so on. Weighted blankets are a big thing, too.

Whenever an OT introduces this type of vest to my daughter, I can't help but wonder whether the benefits outweigh the fashion fail.

Well, never mind all that. Have you seen THIS? It's Thundershirt for your special needs pets, and I couldn't make this stuff up. For more information (and I assure you, I get nothing out of this click), check out www.thundershirt.com. Don't miss the free embroidery!


Screenshot from www.Thundershirt.com
Click to see Video
And for cats too!
   
More from the site:
THUNDERSHIRTS ARE GREAT FOR:
» Fear of thunder/fireworks
» Separation anxiety
» Travel anxiety
» Crate training
» Problem barking
» Hyperactivity
» Leash pulling
» And more!